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Battle to find Cellcept

Rea has just had another battle to get hold of cellcept. Usual story – all supplies used up. She finally got it from her very local, small pharmacist who is now trying to find further stocks for her and one other patient they have on cellcept. Rea is not alone. Annie’s pharmacist has experienced a recurrent problem getting hold of the pills, but he has, up to now, never let her down.

The difficulty seems to be that wholesalers use up their quota of cellcept quite quickly. Smaller pharmacists seem, in our experience, much more willing to order direct from Roche (the manufacturer of Cellcept), if the wholesalers have used up their supplies. Smaller pharmacists are, in our opinion, also able to build up a relationship with their customers and understand their illness, and the complications inherent in each type of medication their customers are using. As Rea said: ‘My local pharmacist spends a lot of time with me, working out when I am next likely to need medication, and trying to ensure that the medication will be readily available’.

If faced with a problem in getting hold of cellcept, BUS recommends that it is best to build up a relationship with a local pharmacist rather than rely on the larger chemists who don’t apparently understand the difficulties for people with Birdshot when they do not have access to their prescribed brand of immuno-suppressant.

One person we know was told by the “large chemist”, to just ask your GP to prescribe a different immuno-suppressant!

Annie always tries to make sure she has at least two weeks of pills left when she requests her repeat prescription to allow her pharmacist enough time to hunt down a supply.

Do others encounter this difficulty? Perhaps we need to draw the problem to the attention of Roche. What do you think?

16 thoughts on “Battle to find Cellcept”

I’ve had problems every time I use my small pharmacy. In fact I use two and every time they are out, not only of Cellcept but also Ciclosporin. My nearest independent pharmacy promise to deliver but never do and I have to pop in whenever I am passing to see if my prescription has been filled.
I sometimes use ABC pharmacy and although they are often out of the drugs they do deliver within a week to my flat which is great. They also offer a service to pick up my prescriptions from my Doctors too which saves me some time.
I always get a prescription filled at the hospital whenever I have an appointment there so I usually have more than I need just in case.
Any body know the maximum amount we can order from our G.P.s in one go?
D x

My GP only gives me a month at a time. I have never asked for more than that or questioned it.
Regarding supply, you seem to have found a solution that works for you which is the important thing.
I suppose my approach is that over the years (3, I think it is now), I have consistently gone to the same Pharmacy and built up a relationship,so now I think he keeps a small stock to help solve the problem (he has one other customer on the drug). I also tend to telephone him before going to pick up my prescription so that I don’t waste time or phone him up if I haven’t got my prescription yet, and am running low, so he knows in advance. It is the faceless larger chemists where you can run into difficulties. Annie

My G.P. won’t even prescribe Cellcept for me so I have to get enough to last me until my next appointment every time I visit Moorfields, but again not without a letter from my G.P. as Moorfield’s policy is only a 4 week supply. It is bad enough having this condition without all the extra hassle of having to try and get a prescription.

It has never entered my head that patients would have problems getting prescriptions from GPs, once the medication regime has been approved!! I get 8 week prescriptions from my GP for Cellcept (and all other medications). Carole, you are right – having Birdshot and trying to manage the side effects of medication is enough of a hassle without adding on difficulties with getting prescriptions, or getting medication. Annie and I are looking into whether we can get any help in lobbying Roche about the supply of Cellcept, but I think we need to also see if we can write protocols for GPs around people with Birdshot. We may be able to do this with the help of Moorfields in the first instance. In the longer term, I am hoping that our contribution to the Rare Disease protocol, which should be implemented in 2013, will tackle this.

My GP refused to begin with. It was only after I got my consultant to phone him up that he finally agreed. He wanted the hospital to prescribe. ie not from his budget. His argument was that he wasn’t monitoring my bloods! The fact that this was being done by the renal department of a local hospital who are in a better position to do this type of job did not convince the GP. but a short conversation with the consultant did the trick. Annie

I asked my GP to increase my prescriptions last autumn so that I could get 3 months supply at a time and he agreed without objecting. I live in a small town out in the sticks and the only time our pharmacy has had any difficulty (so far) with supplies of Cellcept was at the time of the credit crisis in autumn 2008. I understand that the problem of shortages has come about because of the fall in the value of sterling, which means UK drug companies can maximise their profits by selling their stock in the euro zone. In the light of Rea’s experience, I think I’ll put in for another prescription now in case of delays!

This is really out of left field, but since President Obama is pushing for nationalized health care, I am wondering if you think that your system of health care has anything to do with the shortage of CellCept since it is so expensive?

My G.P. also says he is not specialised in prescribing this drug and thinks responsibility should be with my consultant even though she has written to my G.P. asking if he can give me prescriptions. I am more than sure it is all to do with money as i know it is expensive, I pay for my prescriptions and think this is unfair.

Carol, I do agree with you that the issue is all about whose budget it comes out of, and as you said you could do without that stress Do you have an annual prescription card. I find this is cheapest at £9 or so a month? Annie

I know, from a conversation this week with my GP, that she is fully prepared to prescribe my drugs, but as I need regular blood tests due to the medication she has to be extremely careful. She informs me that Moorfields do not send her my blood test results, as she has often requested, so she is not willing to put herself in the position of prescribing me drugs. In truth she is protecting me and herself and I wouldn’t have it any other way. We read every day of the most obvious mistakes happening within the NHS, so I’m happy that my GP is looking out for me. This is something I have to keep pushing with the hospital.
Maybe this could be the reason others of you are having problems with your GPs.
D x

This is a difficult problem. It is quite true that the GP needs the results of the blood tests in order to ensure you can have your medication. I have my blood tests done by my GP. However, the GP is not knowledgeable on the medication you are taking – your specialist ophthalmologist or rheumatologist is the person in the know, and my consultant complains that the GP never sends him the results of the blood tests. And my GP is not good at interpreting the blood results, so I have to do this! We really do need protocols that work.

I have most of my monthly blood tests done at my local hospital with the results going to my G.P, my consultant has written to him (I have a copy of the letter) telling him what tests I need and when I go to Moorfields I take a print out from my G.P. so that Moorfields know what my results are. I do have an annual Prepaid Prescription Card but My G.P has already told me the drug is expensive which makes me think it is a money issue not that I think he would admit to that.

There is technically no maximum amount or minimum amount you can order from your GP. It depends on your relationship with your GP and your GPs relationship with your consultant!!!! GPs are often quite unprepared for, and lacking in knowledge of, rare diseases and Birdshot is a rare disease. So, they will often take advice from the consultant. I get 8 weeks supply at a time from my GP – I don’t want more than that as I use the ‘8 week’ period to make sure I get to see my GP and my consultant on a regular basis so I can adkjust medication as appropriate, get appropriate tests to ensure my eye sight has not deteriorated, etc. Having a rare disease means that often the patient is more of an expert than the general practitioner!

I have consultants at two different hospitals, neither of which is that local to me. As a result, my GP does most of the monitoring, although not the prescribing. I’ve taken to requesting copies of all blood tests for myself (as these could be done at either hospital or at the GP) and have built up a consolidated spreadsheet and graphs to monitor the trends over time. It’s often quite tedious getting the results out of the hospitals, but worth it to have the overall picture which I can then take to consultant appointments.